My mom was induced at 39 weeks. The doctors didn’t even think we’d make it that far. We got to the hospital Monday morning, March 27. Mom was prepped and taken to a room. They gave her medicine and started an IV. After 16½ hours I was born early Tuesday morning, March 28. There was a room full of doctors. They were just standing around; looking at Mom, looking at me, looking at the clock. My breathing was shallow. I had a really soft, faint cry. I was looking around too. After several minutes, the doctors told my Mom and Dad to enjoy their time with me, I would probably pass away soon.

The doctor told Mom “he looks consistent with everything you’ve been told”. Mom asked for me. I laid on Mommy for the first time. Dad asked if someone could clean me up. One of the nurses did. After about an hour, Mom asked for bottles to feed me because I couldn’t latch to her. Instead of bottles, they brought Mom a syringe to drop infant formula in my mouth.

The entire stay folks came in saying I would “probably die soon“. They refused to confirm my diagnosis. My temperature was low; mom asked for blankets from the warmer. We didn’t see a lot of the normal doctors. We saw the bereavement teams and spoke with people about what we needed to do if I died. I had jaundice that they would’t treat. The doctors said it wasn’t necessary. I didn’t get newborn screens or any of “new baby” stuff.. I never left our room. I stayed with Mommy the entire time and that was the best unplanned plan EVER!

Published by ewefoundation

The E.WE Foundation is a 501(c)(3) healthcare advocacy organization supporting families affected by Edwards Syndrome, commonly known as Trisomy 18.